Confused

[Gwenllian]

6 months ago, my bloods showed up pretty normal - but since then, i've lost touch with Rheum (long story), and so I only see my GP when i'm unwell now.

Over the past 8 weeks, i've been having terrible stomach ache, nausea, weakness, and fatigue (and weight loss).

To my GP, i suppose, they sound like vague symptoms, but I feel terrible with it.

I had some basic bloods done last week, which showed I was anaemic, low calcium, some other things I can't remember i'm ashamed to say, and also, my ESR was 20 (not too high I know).

Do you think this is something I should be concerned about?

I feel suspicious it's a flare up, but petrified because I don't feel my GP on her own can cope with it.

My GP has referred me to another Rheumatologist, but i'm worried about how long that is going to take.

Thanks for any advice x

[andrew]

Hi hi

How long until your Rheum appt? Perhaps when you do eventually get there, bring up the possibility of regular checkups?

I think one of the best things you can do for yourself is be forceful (but nice) with the GP. The GO should be able to call up the Rheum and get your appointment moved up as an emergency.

Although my qualifications as an MD came from my last box of Cornflakes, I was thinking that you could be anaemic when I was reading your symptoms. Really though, it's going to take a strong word with the GP. Explain what you've been through before, that you know what it feels like and, while yo uappreciate her help so far, you'd greatly appreciate it if she had a word with the Rheum about the possibility of a more urgent appointment. You could also mention that others rely on you and you need to be there for them. Any worsening of your symptoms could jeopardise that.

What do you think?

[Gwenllian]

Hi

The night before last, my GP admitted me to hospital - and they were awful! They took bloods though, and my ESR and CRP were v.high (they didn't bother checking ANCA), and yet, on the morning ward round, the general medical doctor said that I wasn't haveing a flare up, and to just go home with suspected Irritable Bowel Syndrome!!!!!!!!

I would like to think that I know my own body by now, having nearly died once of twice over the years , but no no, they send me home with no painkillers even.

I feel so upset, (and ill).

I am taking legal action over a previous consultant, for 8 years of misdiagnosis of tracheal stenosis, and my ward round consultant did ask if I still saw this particular consultant or not - and I said not - so I feel as though I am being penalised for this too....

But surely I can't be denied treatment?!?!?

I am going back to my GP this morning, out of sheer desperation.

I am anaemic anderw, and my calcium levels are also low - so I asked the doctor to check for celiacs disease, which they did eventually test for (now waiting for the result).

Thanks for your message, I feel a bit down atm and going a bit stir crazy!x

[andrew]

Do you have someone that can go with you and throw their weight around to get you some attention?

That's horrendous treatment. What about another hospital? Can you front up at the Emergency Department?

I wish I was there to yell at people for you and get their attention. I do that really well, especially when I use my really angry voice

Anyone else have any ideas?

[Gwenllian]

I took my mum and dad with me to the doctors this morning, and she's going to make sure i see a Rheum this afternoon.

Sorry for the moan earlier, i just get really frustrated sometimes

[andrew]

You're perfectly entitled to be frustrated. It'd make me more than frustrated!

Glad you have your mum and dad there. Let us know how the Rheum goes!!

Remember: don't take any crap!

[Twice]

Hi Gwenllian,

I was having a similar experience last year, and over the years I've suspected that people thought I was 'being over-imaginative' on a number of occasions.

Last year my renal consultant responded to my very similar symptoms by insisting that it wasn't even possible for me to be having a flare post transplant. Indeed, he went as far as to say to my face "You don't need a doctor: you need psychiatrist." Unfortunately, the vagueness of WG means that this is a quite common response.

I demanded that my GP refer me to the Vasculitis Centre at Addenbrooke's . It was a long journey, but worth it, because the *actual specialists* there immediately agreed that a flare looked very likely and added MMF (Cellcept) to my meds. That seemed to work pretty well.

Stay tough - and believe you own body.

Sarah xx